Living On, With Heartbreak

When a parent says goodbye to a child, another journey begins. Organized medicine is seeking ways to help deal with the anguish.

Living on, with heartbreak

`What do we do now?'


The list seemed too long for one person to read, so the small group took turns. They stood round a table in a hushed conference room that December night a year ago. The grieving parents were far from the hospital, but as the wind and rain blew outside, the people who had looked after their children called out the names.

They called out R.J. and Zane, and Heather and Samantha, and Favor. For each month, as more and more names were called, someone struck a match and lit a tea candle, until the tray of candles was glowing.

"Every day of their life was a gift to their parents and a gift to us," said Elizabeth Reder, the bereavement coordinator at the Johns Hopkins Children's Center, who remembered a hospital room filled with SpongeBob posters and comics as she talked about 12-year-old R.J. Voigt.

There were a dozen little flames, one for each month. They stood for R.J.'s death in July and for the 125 other children who died in 2003.

They were among the boys and girls who could not be saved, despite medical advances that have spared so many others. Afterward, the people who loved and treated them, who staved off death for a time, must start on another journey that can be just as devastating.

The impact on families and health care professionals, which has been little recognized, is commanding attention. Around the country, nurses, social workers, parents and physicians are pushing into a medical and ethical frontier. They want to bring compassionate care to dying children, not only to help them, but to ease the anguish of everyone left behind.

Too many sick children endure aggressive procedures and treatments. Too many won't get the pain medicine they need. Many go months and years, cycling in and out of hospitals, without emotional and other support, concluded the Institute of Medicine in its report "When Children Die." In calling for more research and better training, the institute urged organized medicine and others to look at what has been a hidden issue.

"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"

The nurses, doctors and others who had been mostly working in scattered ways met the day after the report was published in July 2002. Energized, they formed a coalition, the National Alliance for Children with Life-Threatening Conditions. They've set up an online database with resources for families and caregivers, and they've been bombarded by requests for help. In recent months, the care of critically ill children has been the focus of national conferences and showcased in leading medical journals.

At a conference two weeks ago at the National Institutes of Health, researchers from around the world gathered to assess what they know about the end of life. They concluded that much of it is poorly defined and not understood. The panel called for research to figure out what kind of care works and what doesn't, particularly for groups such as children.

The National Institute on Nursing Research has dedicated half of an $8 million initiative on end-of-life issues to kids. Nine researchers are digging into issues as varied as life support decisions for premature babies and how to do palliative, or compassionate, care for patients of different ethnic backgrounds.

At first, few physicians expressed interest, because many were worried about how to do the research without intruding, said Dr. Patricia A. Grady, the institute's director. But she said families have urged them not to be afraid. They hope something can be learned from their ordeals.


For the family of R.J. Voigt, the aftershocks started right after his death on July 25, 2003. His sister, who is a year older, had seen him rebound so many times that she said she didn't grasp that he was going to die. His grandmother rued the excuses she'd made, not seeing him as often as she wanted when he was so sick. Now, she calls herself a coward in the face of his cancer. R.J.'s mother was swept with the urge to kill herself, not because she couldn't face the future, but because of what she described as a consuming wish to be with her son.

The Friday morning that R.J. died, his relatives said their goodbyes and went to find his mother. She had fled to the place that had always comforted her, the marble atrium downstairs in the hospital's old administration building, where the towering statue of Jesus stands.

Nearby, in the hallway, Michele sat numb in a chair. R.J.'s grandmother sank into one, too. "We all thought chemo and radiation and it would all be over and go back home," Carol Wisnom said, almost to herself, pulling Taylor, R.J.'s 3-year-old cousin, into her lap. "We all refused counseling. We should have taken it. It's just tore this family to pieces."

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